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More women speak out over agonising endometriosis

We’ve been fobbed off by our male doctors too! More women speak out after it emerged male medics didn’t believe pain-racked endometriosis patients were ill

Stranded. Ashamed. Vulnerable. Like you’re going crazy. This is how it feels to hear your debilitating symptoms dismissed as ‘attention-seeking behaviour’, according to 41-year-old Alison O’Neil.

In spring 2014, the local government worker developed a numbness in her feet. ‘One day I was walking around the office without my left shoe on and I didn’t even realise it – I couldn’t feel anything,’ she says.

‘I drove without shoes on for months so that I could feel the pedals. My GP, who’s female, told me it could be a sign of something serious and to head to A&E immediately.’

Yet, according to Alison, the two consultants she saw there, who happened to be men, concluded there was nothing physically the matter with her.

‘The way they spoke to me seemed to imply that patients often invent problems like this for attention,’ she says.

They sent her home, telling her they didn’t know what was wrong, but that the numbness would vanish within a couple of weeks.

Laura Stephenson-Davies, with husband John and children, had endometriosis – not irritable bowel syndrome, as diagnosed

But four months later, she received a letter from the hospital with the results of further tests. She was, in fact, suffering with multiple sclerosis. Alison, from Norwich, says: ‘Nowadays, if I know I’m seeing a male doctor, it puts me off going altogether.’

Last weekend, The Mail on Sunday revealed the harrowing story of a Derbyshire woman’s 18-year battle for a diagnosis of agonising endometriosis – whereby womb tissue grows uncontrollably, attaching to other organs in the pelvis.

Fran Bell, 37, received a £500,000 payout from Nottingham University NHS Trust, whose ‘patronising’ male doctors failed to spot the disease, ultimately resulting in her infertility. Her lawyers said the landmark case could throw open the doors for hundreds more claims.

We asked Mail on Sunday readers who had had similar experiences to write to us – and we were inundated with responses.

Dozens of women revealed how they had been fobbed off as ‘hysterical’ or ‘anxious’ – when they had serious illnesses.

In most cases, the doctors who made crucial mistakes were male.

Laura Stephenson-Davies, 40, a marketing manager and mother- of-three from Manchester, who is married to accountant John, was told by her male GP that the excruciating pelvic pain she endured for eight years ‘every five weeks, like clockwork’ was just a bad case of irritable bowel syndrome.

‘The doctors said it couldn’t possibly be anything to do with my hormones, because it didn’t happen during my period,’ she says.

‘They made out that I was a hypochondriac, repeatedly sending me home with antibiotics or anti-sickness tablets.’

She actually had endometriosis – discovered in 2012 by a private gynaecologist, also male, recommended by Laura’s mother-in-law. She says: ‘By that time my ovaries were damaged and it had spread to my bowel and liver.

‘The doctor had to operate immediately to save my chances of having children.’

Another reader, who developed ‘fibroids the size of grapefruits’ and ‘life-threateningly low anaemia’ as a result of undiagnosed endometriosis, was told that her symptoms – bleeding for three weeks straight – were due to ‘severe stress’.

Endometriosis is caused by cells from the lining of the uterus, known as the endometrium, growing in other parts of the body, usually the fallopian tubes and pelvis (stock)

Perhaps most shocking of all is the tale of Barbara Robertson, from Torquay, whose deadly ectopic pregnancy, in which the foetus grows outside the womb, was mistaken for diarrhoea.

Women make up more than two-thirds of the NHS medical workforce but they are still in the minority in senior roles: just 39 per cent of consultants are female.

In some specialities – oncology and psychiatry, for instance – women do outnumber men but just a quarter of surgeons are female and overall, 45 per cent of doctors are women.

Does it matter, for patients? Previous research shows that male GPs are more likely than their female peers to overlook heart-attack symptoms in women, mistaking them for anxiety.

A recent British analysis found that female GPs spend, on average, two minutes longer with their patients – so are more likely to investigate non-obvious problems. And women who see female GPs are more likely to attend smear tests and mammograms compared to those who visit male doctors, according to a study published in the New England Journal Of Medicine.

‘Some doctors find it much easier to be empathetic with their own gender,’ says Dr Clare Gerada, former chair of the Royal College of GPs.

‘This is especially true when it comes to understanding issues around women-specific problems and the menstrual cycle.’

According to Stephanie de Giorgio, a Kent-based GP who trains fellow doctors, a gender bias often sets in at the first consultation. ‘When it comes to gynaecological problems, the key to a correct diagnosis often lies in taking a thorough personal history,’ she says.

‘Explaining exactly what a woman means by ‘heavy’ periods is important – is it just going through a box of tampons, or do you have to put towels on the bed every night, and wear a sanitary towel?

‘Female doctors may be more likely to ask this.’

Yet, as Dr de Giorgio highlights, it’s not only male doctors who are guilty of dismissing women’s health problems. ‘The medical professional has always had a problem with listening to women – and this applies to doctors of both genders,’ she says.

‘Most of the information medical students learn about anatomy is based on the example of a 70-year-old white man. A man is usually presented as an example of a ‘typical’ patient. So when women’s symptoms present slightly differently from this male model, doctors may not have the answers – so dismiss it as ‘anxiety’.’

What causes it is unclear, but it may affect as many as three million women in the UK (stock)

Indeed, a reader whose eight-year wait for an endometriosis diagnosis resulted in infertility wrote: ‘I have had my fair share of bad experiences from female doctors too. One told me, ‘We all have periods so learn to live with it, it’s called being a woman.’ ‘

A 2014 poll of more than 2,000 female patients revealed that nearly half had been told their pain was ‘all in their head’ – by both male and female doctors.

And the consequences of this bias can be serious.

A 2016 study by The Brain Tumour Charity found that twice as many women as men waited more than a year to be diagnosed with brain cancer after first consulting a doctor about their symptoms.

This echoes the findings of a 2013 study, published in the British Medical Journal, showing that compared with male patients, twice the number of women had to visit the GP more than three times before they were referred to a cancer specialist.

So why aren’t doctors listening to women? The answer may lie, as Dr de Georgio suggests, in the history of medical research. Women are too often excluded from studies due to concerns about pregnancy or menopausal symptoms interfering with results of experiments.

Women-specific problems are rarely the subject of research, nor are the different ways they display signs of illness.

Take heart attacks, which often present as light-headedness or indigestion in women, compared to the characteristic chest pain in men. Two-thirds of heart-attack studies either don’t include women patients, or fail to analyse them separately, according to Canadian scientists.

And a study published last week found that women are more likely to suffer severe side effects of drugs – because they are largely tested on men.

However, doctors aren’t wholly to blame. According to Dr Gerada, women may be doing themselves a disservice by visiting the GP more frequently than men. ‘It’s assumed that if a man comes to the GP it must be something serious – because they rarely show up, unlike women,’ she says.

As far as Alison O’Neil is concerned, it’s no thanks to male medics that she has, so far, retained full use of her limbs.

‘If it wasn’t for my female GP referring me for tests, I would be in a wheelchair by now,’ she says.

‘Imagine if those two male doctors were the only medics I saw – I’d have run away feeling ashamed, embarrassed and told myself to stop being silly.

‘I’ll always be grateful to my female doctor – the only person who actually listened.’

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  • Posted on August 22, 2020